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Thursday, March 31, 2011

Everything has gone swimmingly this time. No vomiting, no rashes...not much sleeping, but that will be better when we get home. We are just waiting for the medicine to completely clear her system. It could be as early as this evening, or in the next two days. It took 5 days last time, but we are hoping the shunt helps; because it helps drain the excess fluid from her brain, the medicine that is trapped in that fluid can move into the blood stream faster, and therefore clear her system faster.

Yesterday I had a fantastic outing. Chris had the day off from work, so he stayed with Scarlett while I went to the SF Zoo with my first grade class. It was a gorgeous day, and I got a little sunburned, but it was worth it. The kids were so excited to see me; they argued over who got to sit next to me on the bus, and whose group I would eat lunch with. I miss them, and their energy (though it was exhausting!) I am looking forward to taking Scarlett to that zoo soon, too!

Today, no big events, just waiting. She is sleeping, I am cleaning up the room and updating my kid movie repetoire on the hospital movie channels (they finally got some new ones!)

Tuesday, March 29, 2011

Everything is going smoothly so far (knock on wood!!) She was admitted in the early afternoon. It is so much better knowing what to expect when we arrive; we had everything we needed, knew what to ask for and felt much more organized and calm. Hydration began as soon as we got here and ran for a little over 6 hours. Because the chemo is very hard on her kidneys, they flood her system before, during and after. We have to record everything she eats, and save all her diapers to be weighed in order to make sure her kidneys are processing fluids properly.

Around 9pm, chemo began. This medicine (Methotrexate) runs in a concentrated high dose for one hour, then the remainder over the following 23 hours. She gets nausea medication just in case, but this does not seem to make her feel sick. We are watching carefully for any signs of skin irritation, since that was a problem last time. We took a few precautions this time to help ease it - trimmed all the adhesives to have minimal contact with her skin, used a protectant under the adhesive, used a padded name band and started the barrier cream on her bottom early. Hopefully she comes out a little less red this time. We change her diaper every hour or two (the nurses are a great help with this over night!) to protect her skin from the residual chemo and excess moisture.

We will be here at least a few days. This chemo must be fully flushed from her system before she is discharged. This is measured by blood tests every 12 hours after the chemo stops, as well as by urine samples (collected with cotton balls in her diapers). We are already planning her admission next week.

Thank you Shannon and my little friend Patrick for their dinner delivery to the hospital. The strawberries were SO delicious! WAY better than cafeteria food.

We are revving up for chemo again. I could not sleep, so I have been up since Chris left for work at 4am. I went to bed last night upset and nervous, and it hasn't gone away. We have to wait for the call that a bed is ready, so I am going to try to fill the day with errands to occupy my brain. Unfortunately, I can't do much until the sun comes up.

It is a struggle to stay optimistic sometimes. I try so hard to stay in the present, not worry about what may lie ahead, but the darkness creeps in sometimes. We focus on how well she is doing now, but there are subtle reminders that her progress is still slow.

I don't know if it is a universal thing, but I find that modern parenting in very milestone-focused. We are constantly looking for what physical or developmental milestones our children are hitting, and use it as bragging rights among other parents when they are even slightly ahead of the curve. The October baby message board that I am a member of is overwhelmingly full of moms boasting about their child's latest progress, so eager for their babies to be done with babyhood faster than their neighbors. There are countless calenders and schedules for when babies should hit each mark, week-by-week points that we feel we should match. I have seen this as a teacher, too, as people push their kids to be more physically, emotionally or intellectually advanced than others, and don't understand why other kids can't do what theirs can. This puts a huge amount of pressure on those whose kids don't fit the same schedule.

When your baby isn't following the charts, it is hard. I catch myself feeling disappointed that she is not doing things that other even younger babies are doing. I feel defensive, that I have to explain why she isn't "on track". I watch her every day, looking for signs that she is changing or growing; it can be too much to process. I stopped reading the "Your Baby This Week" lists, since they just don't apply to her. Her progress is awesome for her, and she continues to recover and improve, but there is no chart for "What Your Baby With Brain Cancer Should Do This Week". Even that would vary wildly.

At every appointment, we talk about her development, what new "tricks" she is learning and how she is adapting to her own needs. In the next few weeks, we hope to start regular physical therapy that will help to strengthen and loosen her muscles from weeks of laying in hospital beds. I remind myself to be patient, that we can't do everything in a day. She will do it at her own pace, when it is right for her.

Friday, March 25, 2011

She passed 13 pounds! This is awesome news! She's feeling good and is on NO medication today for the first time in months. It's short lived, as she needs some antibiotics over the weekend, but it was a great feeling to not have to give her any medicine. They are very happy with her movement right now - she is grabbing her hands in the middle of her chest, reaching for toys and putting things in her mouth.

All is clear to begin her next cycle of chemo on Monday. This chemo takes a long time to clear her system, but does not cause too many bad side effects (or at least it did not last time - this can change with continued doses). Unfortunately, she will get the NG tube while in the hospital. It is a precautionary measure to ensure she does not lose any more weight in this cycle. While she is gaining, she is not really eating as much as she should. Our doctors say they have never had a baby get though this chemo without a tube, so it it inevitable to them. We are doing it now, while she feels good, rather than waiting until she is already sick to force feed her. She will still be able to eat as much as she wants by mouth, but we will supplement with her recommended amount of calories into the tube. I will begin to learn the process of inserting the tube through her nose so that if she pulls it out (or it comes up when she throws up...) I can reinsert it without going to the doctor. Another Mom Up moment, I'm sure.

She will also see a neuropsychologist next week, which is a new addition to her medical team. This is part of the study protocol, and I am very interested to see how and what they can learn about her at this age.

We're ready for the weekend, and hoping we can get together with some friends! I am also determined to get her picture taken tomorrow; we didn't get it done yet this week!

Thursday, March 24, 2011

Another huge THANK YOU to the teachers in my school district. I just found out that enough days have been donated to keep us fully insured through August. This is a HUGE weight off of our shoulders and such a blessing. In the past, I have gotten slips requesting donations of sick leave to other teachers, but I never did it...I now understand just how necessary those kinds of gifts can be and will do my best to help whenever I can. Pay it forward!

I'm still getting laid off (for the third time). It's a bad time to be a teacher around here. But, we'll deal with that later.

Thanks also to The Irwin ladies for the yummy Italian food and the toys for Scarlett (she really likes them!); to the Fullertons for our favorite, Chipotle; and to Carol McCarty for her casserole and brownies.

This is so amazing. We started this blog to share with others, reach out and connect to people outside the hospital. We have gone so far beyond that, and are touched by all of the positive energy that is flying toward our little girl every day! We still read every comment, every e-mail and keep every token of love that is sent to Scarlett. I will honestly say that the help we have gotten here, both informationally and financially, have completely saved us in the last three months.

Thank you for reading about Scarlett. She is currently napping in her swing, completely oblivious to me jumping up and down. She's doing great, and we will continue to share her journey as long as we can!Wow!

Wednesday, March 23, 2011

The time has come: I am no longer breastfeeding. It is disappointing, and I am riddled with guilt for deciding to stop, but it had become too much of a fight. We struggled with it from day one, long before surgeries and chemo, and it continued to get more difficult. I got hours of help from many different lactation consultants, rented a hospital-grade pump, and had lots of support, but I just found myself not able to keep up. I discussed it for a long time with Chris and Scarlett's doctor, and we decided that it was up to me to stop when I felt overwhelmed. That time has come.

I was prepared to nurse for as long as she wanted to, found multiple resources to go to for help, researched and invested in equipment to support me and read every article I could. It turns out that her anatomy and mine were not a great match, so it was challenging. Then, when she was hospitalized the first time, my milk supply dwindled, and I struggled for the last 3 months to get it back. It is nearly impossible to pump in the hospital, and I am completely in awe of those who can do it. The hospital does provide pumps and all the supplies for moms who have a sick baby. Sometimes I got my own to use when I wanted, other times it was a shared pump in a little closet. Sharing a pump with others meant sometimes waiting in line, which kept me from my child; pumping in her hospital room meant inevitable interruptions. I think that every doctor we see has seen me topless. I even had one try to shake my hand while I was holding the pump up...awkward.

It's not the first of our ideal parenting plans that have flown out the window. Last weekend, we sold or returned all the cloth diapering supplies that we had. Our schedule made it nearly impossible to get the dirty diapers out for the service to pick-up (and to launder them ourselves would be just as hard to fit in).

There are sure to be more plans we must let go; we planned to be typical parents, but we don't have a typical kid. She's extra-ordinary, so we have to keep up.

P.S. - For those who remember the breastmilk cancer treatment I mentioned earlier, don't worry; that study has only been done on rats in experimental settings. It has fantastic implications for the future of cancer treatment, but it is not ready for babies.

Tuesday, March 22, 2011

<I realized that this was cut off at the end, so I fixed it and reposted>We found out I was pregnant on Valentine's Day. We always thought it would be difficult for me to get pregnant, since I was diagnosed with PCOS when I was 21. We weren't trying, so it wasn't as hard as I thought it would be.

My pregnancy was relatively easy and trouble-free. At every appointment, everything measured exactly right - no morning sickness, no high blood pressure, no gestational diabetes, only gained 18 pounds. All the genetic testing came back clear - less than 1/40,000 chance of Down Syndrome, despite family history. We had a small scare in July; I started having cramps, so they brought me in for monitoring. A short time later, they told me I was just dehydrated, so to drink more water.

The baby was very inset in my abdomen, so I barely looked pregnant, though I felt it. Unless I told people, they could not really tell I was pregnant until around 8 months. I still wore many of my regular clothes and could never make maternity clothes fit properly.

We heard a perfect heartbeat at 10 weeks. We saw our first glimpse on ultrasound at 12 weeks; a little bug bouncing up and down and all around. At 20 weeks, we learned we would have a daughter, though I had felt sure for weeks that we would. No boy names ever felt right, blue clothes never looked right. I was always meant to have a girl.

In June, we chose her name: Scarlett Grace. No special reason, we just loved the sound of it. Chris was adament that we choose a name that was less common than his; he did not want our child to always have to use her last initial as he had - "Chris W."

As my due date approached, I slowed down a lot. I stopped working on September 29, when my sister was admitted to the hospital. Once maternity leave began, I was not sure what to do with myself. I puttered around the house, folding clothes and blankets over and over to make them just right. I walked the dog around the block every day to try to jumpstart labor.

At 37 weeks, I was 1 cm dilated. At 38 weeks, still 1 cm, my OB/GYN told us that we were looking at a big baby, at least 8-8.5 pounds. She suggested we could induce as early as 39 weeks if we wanted to. At my 39 week appointment, after my sister lost her baby, we asked to please induce just to have a plan. We didn't think we could stand the stress of waiting and rushing around, and wanted the family to be prepared and calm. The midwife told me again I was carrying a big baby.

On Friday, October 15, I was scheduled to induce, planning for delivery the next day, right on my due date. That day, as I waited impatiently, trying to rest, I talked to my sister on the phone. We were discussing contractions, and then I suddenly had one. It was pretty mellow, so I just took a nap and waited. At 7pm, I called the hospital to see if they were ready to induce me. I expected them to say no, it's too busy, just stay home. Wrong! They said, "Come on in, we're ready for you." We checked in, got settled and prepared to meet our dream girl.

I was 3 cm when I was admitted. They began Cervadil at 9pm and told me to rest, that they would monitor contractions I was already having and reevaluate in the morning. At 9am, I was 4 cm, so they broke my water and began Pitocin. There was meconium (baby poop) in the amniotic fluid, so the doctor said it was lucky I was there already. As soon as my water was broken, the pain began. I got an epidural shortly after; the first try didn't work, so I got a second.

The baby started to show signs of distress. They put an oxygen mask on me and made me lay on my side, turning me every hour; my legs were too numb to turn myself. By 2pm, I was barely 5 cm, and the doctor was getting worried. We learned later that she had begun preparing for a C-Section just in case.

Suddenly, there was progress. I was 8 cm, then 9. The doctor said it could still take a few hours to be ready; I refused to believe that. Contractions were tolerable but painful and I was tired and anxious. I started to push on my own during contractions to get the baby moving. It worked - the next check, I was 10 and ready to push. Again, the doctor said, since it was my first baby, I might have to push for a few hours. She suggested a "test push" to see how I did...as soon as I pushed, she flew, grabbing all the nurses, throwing on scrubs and prepping the room for delivery.

20 minutes later, Scarlett made her debut. They were worried about the meconium, so they did not let her cry right away. They laid her on my chest, but the blanket covered my face, so I didn't see her. Chris cut the cord, even though he swore he wouldn't want to. As soon as they cleaned her up, she let out a cry. It was a huge relief to hear. My sister took pictures of her as they cleared her lungs so I could see her.

When they got her on the scale, she was only 6 pounds 7 ounces; what happened to that big baby I was supposed to have? We laughed that we had been so ready for her to be big, we never considered she would be small. She was finally placed in Chris' arms, as tears rolled down his face. Just days before, he was sure he wouldn't cry, that he was prepared and knew how he would feel. She was just that beautiful.

We are officially clear and well until Monday! Her counts are up, she's feeling well, eating a lot and looking good. No more at-home shots for a few weeks! It's a short break; she will be admitted to begin the next cycle of chemo on Monday.

Now that we have survived one whole cycle, I feel much more confident about what we are doing. She is enrolled in a research study that dictates the course of treatment; however, our doctors will change the plan if they feel she would be better off with a different medication or treatment. Each cycle is about one month long; we repeat the current cycle three more times. That is followed by two months of a different regimen, followed by a third course that is another few months. We are in the most intense segment now, called induction. This involves IV chemo, hospitalization and frequent (twice a week) blood work to track her progress. Basically, it looks like this:

Induction (4 cycles of 4 weeks = 16 weeks)

Week 1 - Methotrexate (in-patient)

Week 2 - Cyclophosphamide, Cisplatin, Vincristine (in-patient)

Week 3 - Vincristine (out-patient)

Week 4 -Clear

Consolidation (2 cycles of 4 weeks = 8 weeks)

Cyclophosphamide, Etoposide, Carboplatin,

Maintenance (6 cycles of 4 weeks = 24 weeks)

Oral Cyclophosphamide, Topotecan, Erlotinib

That's 48 weeks. We're technically only in Week 4, since her RSV and shunt surgery caused so many delays this round. If there were no more delays (which there likely will be - babies are not robots and we have to allow for illness and other delays), that takes us through December of 2011. It is daunting to think about, but also reassuring that there is an end out there...way out there.

Friday, March 18, 2011

This morning we had yet another blood draw appointment. The weather is nasty (at least for the Bay Area - rainy, windy, and under 50 degrees), so gave myself an extra few minutes to drive across the bridge. On the way, I got coffee from Chris' Starbucks (everyone in town wants to see her when we are there!) and got gas.

I knew gas was expensive, but SHEESH! For out-of-towners: gas is very expensive here. I paid $3.89 for regular gas, and that is the cheapest off-brand station in town - I checked. It cost $75 to fill my car. I drive about 50 miles a week for her appointments alone, and my handed-down 1999 Explorer is not the most economical to drive. We decided that we are going to switch cars for appointments, since Chris' Civic does a lot better on gas mileage.

We also are trying out the Google Ads function of Blogger. People have been suggesting this for months, and we were staunchly against it. However, we thought we could try it out just to see if we can help offset our gas expenses. I am not sure if it will do much, but I hope the ads are not too annoying or intrusive. We're going to try it out for a while and see what happens.

Anyway, once we got to the hospital, she was an awesome little patient and didn't even cry when they poked into her port to draw the blood (numbing cream helps, but she usually flinches at the pressure). It's sad to see her adapt to these procedures, but I am glad she is taking it so easily. Her labs show that the transfusion worked, and she is no longer neutropenic. Yea! The next hurdle is to get her immune system strong enough to be able to stop the shots.

Round 2 of chemo is set to begin next week, if all goes as scheduled (which it never does.)

Thursday, March 17, 2011

A little blog remodel today. I am itching to change things around our house, but don't have the money, time or extra sets of hands necessary, so I redecorated the blog instead.

Yesterday's blood transfusion was easy for Scarlett, despite the seemingly inevitable "unknowns" that we come up against with every procedure. This time, it was allergic reactions. The last time she had blood products, she had two hives pop up. Subsequently, her chart was marked as "allergic to blood", which means they still give her blood as needed, but give her a Tylenol/Benadryl cocktail to quell any reaction (the idea that she is allergic to blood is confusing, but seems to be no big deal for the doctors or nurses). The circumstances were such that we don't think the hives and blood were actually related, but it could not be changed until after this transfusion.

So, after starting an hour late and waiting the 5 hours for the red cells and then platelets to go in, we were packing to go home. As the nurse came to de-access the port, she noticed a red blotch. This instigated a hour of waiting to see if any more redness appeared, or if any breathing problems cropped up. Nothing came of it, so she was cleared to go, though I don't think they will clear her chart yet. We finally got to leave around 8:15pm, 7 hours after we arrived. She is pinked up and seems to be handling it well; we go back tomorrow for more labs to see if the transfusion has resolved the low numbers. We're crossing our fingers that, in addition to the red cells and platelets being replaced, her white blood cell count will have increased (on its own - these cells cannot be transfused) and we can stop the daily shots for a few weeks.

Slightly nerve racking is the appointment I scheduled today: her first full-detail MRI since surgery (the MRIs she has had over he last two months have been to check the fluid in her brain ventricles, but are low-resolution and don't show tumor). This is the only way we can track regrowth, so every two months we will hold our breath and hope the chemo is doing its job. The tumor is most likely to regrow in the first 6 months after surgery, but could at any time for 5+ years; even if she is clear now, she will continue to have MRIs for many years.

A few delayed THANK YOUs to Sandy Tebow, Joanne and Ron Manhire, and Nancy Kratochvil for the delicious dinners! We are enjoying everyone's creativity with Chris' vegetarian diet!

Wednesday, March 16, 2011

I couldn't sleep, so I'm up at 5:30am after an hour of tossing and turning while Chris and Scarlett (and Cosmo and the cats...) sleep. As I was wandering the internet, I found out that there has been a scam involving someone posing as the mother of a cancer kid and taking money from people. I am so sorry people were hurt. I know people are skeptical, as they should be, so I just want to confirm that we use everything we have been given for Scarlett; we have a trust account for expenses related to her care; we save everything - every card, every kid-drawn note (we just got a binder-full of pictures and letters from my first graders), every gift for her; and more than anything, we are just very grateful and overwhelmed by the generosity that has been shown to us in the last few months. I am not sure where we would be without the help of our family, friends and many, many strangers who have been touched by Scarlett's story.

*************************************************************Yesterday, Auntie Lindi came with Scarlett and me to the doctor. We go twice a week at least, and Chris often has to work, so it was great to have someone to help me haul the stroller and gear around. I am still learning to navigate the world with a stroller; it is quite a challenge sometimes, between things falling out of the basket, finding elevators rather than stairs or escalators, squeezing between furniture in a store or waiting room, all while trying not to clip the heels of someone in front of me. And somehow, I always end up holding the baby and filling the stroller full of stuff...At the appointment, we got good news and bad news (as we usually do). Good news: Despite the recent gastrointestinal pyrotechnics, she actually GAINED a tiny bit of weight. This means no NG for at least a few weeks, since the nausea is wearing off and her appetite is recovering. Woo!

Bad news: She needs a blood transfusion. This is expected, since the chemo is doing its job of killing off blood cells. All three of her blood counts (red cells, platelets and white cells) are very low, so we are going back today for red cells and platelets (her white cells have to build up on their own). It's not really a big deal, in the grand scheme of things; she has had blood transfusions before (after surgery #1 and after RSV); it does, however, take 5+ hours to get the blood into her. So, a long day at the hospital is ahead. It was good to see that, even though her counts were very low, the doctor nor I thought she looked very sick - she is not too pale, still gets rosy cheeks, and has good circulation response in her fingers and toes.

She has been such a trooper for this first, very long and drawn out round of chemo. Luckily, she gets one more week of a break from the heavy drugs to let her body recuperate. We are planning to be readmitted to the hospital sometime after the 27th...it all depends on her blood counts, since we can't start until she is back to full power.

Monday, March 14, 2011

Scarlett is 5 months old this week! She is just over 12 pounds and about 23.5 inches. She smiles a lot and gabs on and on in her own language. She has discovered toys and likes to bat at things and grab anything she can reach. We are working on tummy time; she can steady her own head when we hold her upright, and likes to look all around. She is sleeping well, about 8 hours at night and two long naps during the day.

It has been three months since her tumor was discovered. We're so proud of her, and so grateful for each day, week and month we have had. I can't wait to see what the next month brings!

Sunday, March 13, 2011

She's feeling better, but still not 100%. We finally got home at 5:00am. IV fluids helped, and we are now giving her Pedialyte to help keep her hydrated, since she likes it and can keep it down a bit easier. I'm sure they will have lots to say about it at our next clinic visit...

Saturday, March 12, 2011

I am writing from the emergency room at Stanford. It's pretty cushy, as ERs go, with a huge Apple computer for patients and parents. So, with nothing better to do, I blog.

We took Scarlett for her scheduled clinic visit and outpatient chemo this morning. She was doing well the last two days: no vomiting, appetite coming back, all good things. We saw the doctor, who thought she was looking great. Scarlett smiled, cooed, and was in good spirits. As soon as the doctor left, the little lady decided to barf all over the room; that projectile, uncontrollable kind of gastronomic event that only exorcists and parents have faced one-on-one. We tried to clean up the baby, the wall, the bench, the chair, the floor and Chris' clothes with the single burp cloth I brought from home and the automatically dispensed paper towels in the room. As I was frantically waving my hand in front of the paper towel machine, the nurse came in to help clean up and go on with the blood draw and chemo. All went to plan, and since she was still gagging, we gave her additional nausea medications and headed home.

We got a call a short time later telling us that her neutrophil count, which tells us the stability of her immune system, was low, and she was considered neutropenic. This essentially means that she is very susceptible to getting sick, and any fever would be considered an emergency worthy of hospital admission. While we knew this was coming (it is basically the point of chemo, to kill off the current blood cells along with the cancer), it marks a new phase of her treatment, where she is dangerously close to a whole new level of sick; even minor viruses or bacteria could run rampant in her compromised system and leave her in bad shape. However, no fevers so far.

She slept most of the evening, so I tried to get more milk into her before we went to bed. She ate eagerly, but gagged, so she got more medication. Just as I finished that dose, I gasped at the sight of the top of her head completely sunken in, like a crater surrounded by mountains of bone. After the shock wore off, we remembered that this was a pretty indicative sign of dehydration, and we called the on-call doctor for advice. He recommended we bring her in for IV fluids before the dehydration made the nausea even worse. As we packed her up for the trip, she again let loose and threw up all over the kitchen...and Chris. Definitely needed to get to the doctor, so a quick costume change and we were off.

Now it is 12:30am and we are sitting in the emergency room. We've been here a solid few hours so far while the ER doctors assess her and try to figure out all of her charts, medications and possible issues. This is my first big test of needing to know what medications she is on, what doses, when things were administered and what procedures we were told to follow. So far, it all seems to be going well. She is getting IV fluids while she sleeps on the hospital bed with Chris, who was up at 2 am for work this morning. We are hoping to go home in the next hour, as long as her latest blood work comes back ok. Not sure what will happen tomorrow...

Thursday, March 10, 2011

Today Scarlett had a neurosurgery check-up. They checked that her shunt was still set properly (it was), that the incisions from that surgery, both on her head and belly, were healing properly (they are), and that the shunt is doing its job of draining fluid from her brain (it is!). The main way of checking this is by measuring the circumference of her head. She has consistently been between 41-41.5cm since her surgery. This is large for her age and relative to the rest of her, but it is not increasing, so we're in good shape. We discussed the multiple soft spots on her head; there are a few places where there is no bone underneath. This is very strange when you feel it, but all babies have soft spots, so it's just another "special" aspect to her. They expect bone to eventually grow in these places. If it doesn't, they can do some bone grafts to help it...we'll just wait and see. They tried to squeeze her in for an impromptu MRI, just for good measure, but there was no opening in radiology, so we will just wait another month.

We got another interesting bit of information today as well: they are monitoring her growth for a head-shaping helmet. We did a 3D scan to set a baseline by which to monitor. In the meantime, we are supposed to position her head in a specific way while sleeping (I'm still working out exactly how to do this safely) to help round out her head. In the long run, I don't feel like it matters what shape her head is, but she may feel differently when she is older. I can imagine it now..."Mooooommm, how could you POSSIBLY expect me to go to school with a lumpy head? I can't believe you would do this to ME! Couldn't you have done SOMETHING?!" I'm sure it won't be this specific, but you get the picture. My mom keep teasing that her feisty attitude that has gotten her through so much is not going to just disappear...so if it comes to a helmet, we'll do that too. Add it to the list!

We're learning more and more the difficulties of spreading her care between two separate hospitals. We still feel that it was the best choice, since she is getting excellent care in each department, and they are sharing her records freely between each other so that everyone knows what is going on. It gets complicated when an issue pops up at one hospital that can only be answered by the other. For instance, when she had the shunt surgery in Oakland, the PICU nurses had to call Stanford to find out what size needle is used in her port (I wrote it down so that we have it next time). Even harder is that no other doctor has any idea what is going on with her skull bones. She is all Humpty-Dumpty (a very cute one!) under the skin and is a mystery to anyone who is not her neurosurgeon. When we were in the hospital last weekend, I noticed a little swelling, and the oncology resident who looked at her quickly admitted that she had no idea if it was normal or not for a baby with such an extensive surgical history. The further out from surgery we get, the less time we will spend in Oakland, which simplifies the whole process. We all have our fingers crossed that she keeps making such great progress that we don't need any surgery for a nice, long time.

Wednesday, March 9, 2011

Scarlett is finally feeling better. She has been nauseated and grumpy most of the time since chemo on Friday. I can't blame her - it's got to be uncomfortable. But today is the first that she has not thrown up at all, and her appetite seems to be returning. Good girl!

You were all right - the shots have been easier since the first day, and are already no big deal.

Yesterday we had some good and bad news at her appointment. Her blood counts are good, and her body is recovering from the chemo. Good! They don't want her admitted over the weekend, since her doctors are not around, so weekday admissions whenever possible. Good! Her incisions are all healing well, and her head circumference is back to normal (for her) after the shunt placement. Good!

But: She is not gaining weight. BAD. Her appetite is very low (though returning) and that means she doesn't gain weight. She is already very, very small for her age (just over 12 pounds at almost 5 months; about the 3rd percentile), especially for a full-term baby. Babies can't really be convinced to eat when they don't want to; when we try to feed her, she just sticks her tongue out and refuses to suck. So, if she loses any weight at all, she will have an NG tube placed for the remainder of chemo. She had this before and after surgery - a tube going through her nose into her stomach. This allows us to feed her when she doesn't feel like eating.

While we knew this could happen, I didn't realize it would be so soon. It could happen Friday or next week; probably within the next few weeks. It's a minor complication for Scarlett; she will want to tug on it, like she does with all the monitoring lines in the hospital, which could displace it. It's more psychological and emotional for me - she will have a tube taped to her face for the next few months. No hiding it in pictures like her surgery scars, no covering it with a cute hat. When we go out, other people will not see her bright blue eyes or her pink cheeks or her gummy lopsided smile first. It will be a part of her history, so we just move forward with it, but it is not a great development.

Monday, March 7, 2011

Chris, Scarlett and Cosmo are curled up on the couch taking a nap together after Chris' 4am shift today. They all look very cozy.

Cosmo's head is on a pillow, just as he likes. Scarlett is bundled up in the new butterfly blankie from the Garretts!

I think I have a whole photo album's worth of shots of them sleeping just like this, yet every time I have to take another picture. It's just the sweetest thing to me!

I gave her the first shot this morning. I psyched myself up for it, got all the supplies ready (syringe needle, vial, alcohol swabs, cotton ball) and then got her ready. We played on the changing table for a few minutes first, and then I just went for it. I think the cold alcohol swab was the worst part for her. I ended up having to stick her twice - in my haste to do it as quickly as I could, I didn't actually inject the full dose the first time. I'll do better tomorrow. We snuggled for a while after to calm us both; I'm glad she won't remember that I had to do this to her.

We are getting ready for a busy week - 3 appointments, including 2 blood draws, a dose of out-patient chemo and an MRI.

Sunday, March 6, 2011

We're hoping to be discharged soon. She was nauseous and sick this morning, but it seems to be manageable with some medication and a nap. She has some acid reflux, so we add another medication to handle that.

Today, we did the training for something I have NOT been looking forward to: shots. Scarlett will need a shot every morning for a few weeks after this chemo to bring her white blood cell counts back up. I was surprised to hear this a few weeks ago when I picked up a big batch of prescriptions at the pharmacy; they handed me the needles and told me that the nurses would teach me how to use them. I'm not too squeamish around needles or blood, but using a needle on my baby is a whole other thing.

While Chris was here for his morning visit before work, we had the nurse give us the necessary lesson. She showed us how to draw up the medication into the syringe, how to clean the vial and the injection site, how to hold the needle at a 45 degree angle as we squeeze a little bit of arm pudge. Then, she pushed up her sleeve and had Chris give her the tiny bit of saline we had practiced with. Yes, really. She said they usually suggest practicing on an orange, but it was more helpful to feel it ourselves so we knew it didn't hurt too much. We all gave each other a practice shot to see how it felt to push the medicine in and the stick of the needle. We'll see if it is just as easy with Scarlett's tiny arm tomorrow...

Saturday, March 5, 2011

19 weeks...polka dot BabyLegs from the Facebook crowd, and the pink and green fuzzy blankie that came to her a few weeks ago. Thank you!!!!

What's she always looking at? Her eyes usually look toward the left because of her neurological injuries, but there's also someone more interesting to look at than mommy!

20 weeks. This afternoon she is feeling much better after a few different nausea meds and a long nap. Her right hand cannot leave the port access alone; she likes the creaking and crackly noise the plastic and tape make. We made a highly fashionable muscle shirt to cover it.

We had great nurses to get her started and make me feel a little more confidant in her treatment this round.

I bought a new pair of shoes last night before we came to the hospital.

Chris brought me a mocha and creme brulee french toast for breakfast.

My shower was nice and hot this morning.

All the nurses and doctors have complimented my haircut.

Not so good:

I lost it on the phone with the nurses yesterday as her admission kept getting pushed back (they apologized, and I know there is nothing they can do about it).

There was only one bed available for the next few days, and it is in the ONLY shared room in the unit.

Our roommate is a teenager who stays up late and sleeps late...and her mom snores (still, as I write this at 11:00 am)

Shared room means only one parent can stay. Chris will visit for a couple hours each day when he is not at work.

My shoes aren't as great as I thought and are going back to the store.

Just plain bad:

This round is hard on the little one. I woke up to her throwing up in her sleep. She can't keep anything down right now. It doesn't seem to bother her too much, but it's hard for me to watch. We'll see how it goes over the next few days as her body adjusts to the medications.

Friday, March 4, 2011

Chemo didn't happen yesterday. We went in for all the pre-admission blood work and physical, then waited for 6 hours for them to come back and say that they didn't have a bed available. As we were packing up and leaving, the nurses kept thanking us for being so patient and keeping a good attitude; behind my smile and "No problem! We'll see you tomorrow!" I was so frustrated and exhausted. I have to steel myself for hospital life and especially for chemo and it's effects, and each time that the plan changes, I am left feeling like a deflated balloon, all my energy zapped away by waiting rooms, phone calls and anxiety.

Then, 20 minutes away in evening commute traffic, we realized that Scarlett's port was still accessed (the needle and IV line were still attached). It's not unsafe or a big deal, really, but we had to stop and call in just to make sure we didn't have to do anything special, since we've never taken her home accessed before. They assured us she would be okay overnight; it saves her from being stuck again today.

I am battling within myself to be honest and tell them how I feel when this continues to happen, and to be patient, knowing it is not their fault that there are so many sick kids. They know it is hard for us; they do what they can to make me comfortable, but I am not the patient. Scarlett is doing well compared to many who are there, so I tried to be grateful that I got to sleep in my own bed another night.

We're waiting for the call that a bed is available tonight. It is harder to be there over the weekend because all of our regular doctors, who we trust and who know us, are not in, so questions get bounced around. Plus, Chris has to work closing shifts all weekend, so his time in the hospital with us will be scarce. Hopefully everything will go as scheduled once we get there...but I'm not betting on it.

Thanks to Tammy and Jacqueline Sawyer for bringing over a delicious dinner! Thanks to Lauretta McCarthy, who brought dinner, and topped it off with wine and cheesecake! We feel very lucky (and full!).

Tuesday, March 1, 2011

We're feeling a little sorry for ourselves around here today. Unfortunately, Chris' car was broken into this morning while he was at work. Nothing is missing, no one is hurt, but we're just bummed out.

Last night we went to the dentist. For years, we have scheduled our dentist appointments together out of convenience, and a bit of "if you go, I'll go" accountability. When we made this appointment 6 months ago, I was still pregnant and we had no idea what we would be up to by now. We didn't take the time to reschedule, so we both went, and Scarlett came, too.

No one in the office knew what has been happening with Scarlett. When they asked, "How is it going?", we both laughed a little and said that it has been very challenging. A few minutes later, I could hear Chris trying to explain; he went with the "Just Say It" approach: "She has brain cancer." This, of course, changed the mood considerably.

When it was my turn, the hygienist working on my teeth wanted to know all the details, which I don't mind sharing. The trouble came when she asked a question while manipulating several sharp instruments in my mouth. It was something like...

"How did they get the tumor out?"
"Tuhh twesh hou thurgg."

"How long will she be in treatment?"
"Abbu a yee."

Hopefully I didn't spit too much when I tried to explain; she was so concerned that I felt bad making her wait for the answers. They were very kind, helping quiet Scarlett when she got fussy while we were both in the chairs and wishing us all the best. They even said we could come back for toothpaste whenever we needed it.

Oh, and Mom, no cavities!

THANK YOU to Jennifer Jones, who brought us tofu, rice, won tons and the most sinfully delicious brownie-stuffed "pillow cookies" that we snuck in to the movie theater with us on our first "date" in 5 months (We saw The King's Speech, just in time for it to sweep the Oscars). THANK YOU to Andie Britten, who made us stuffed pasta shells that we enjoyed for lunch today. We truly appreciate it!!!